Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 , From my research among the CHARGE families, the results for cochlear implants have varied, but most of those I " spoke " to had a positive outcome. The process can be very long. Ethan has no auditory nerve in one ear and prior to implantation in his " good " ear, he had 50-75 db hearing with aides (really no access to speech). Now, almost a year after being implanted, he can hear 15-30 db. It wasn't as easy as it sounds to get to this point. The surgery was difficult because of the unusual anatomy of his ear and the aural rehab after turn on is necessary. I agree with Kim on being realistic on what the implant may bring. Prior to surgery, we would have been happy if he could just recognize sounds in his environment. It is wonderful that Ethan can hear music and now can understand some speech. If this is all that we get from it, it would be worth it because it has opening up his world. In addition to searching the CHARGE archieves, there is a support group of parents who are considering implants for their children. My son's audiologist recommended it to us, but I didn't ever subscribe. It is http://groups.yahoo.com/group/cicircle. Jody - mom to Ethan (3.5 yrs - ChARGE) and (6.5 yrs) Kim Lauger wrote: , Search the archives on this list under the heading of cochlear implant. You will find lots of input, some from families no longer active on the list. In addition, the handouts from the conferences that you can get from the CHARGE foundation have handouts pertaining to hearing, cochlear implants and so on in them. Just know that you want your team to have experience with CHARGE or to at least be talking with professionals who do have experience with CHARGE. The response in CHARGE is not nearly so black and white as in other kids. Some kids it may be this simple, others it takes a lot longer. The biggest message parents give is to be realistic about what your goal is - to come out of it with perfect hearing, doubtful - to increase the availability of sensory information, hopefully. Kim > Jody, my daughter wears hearing aides currently. They do not help with her > deafness to our knowledge. She is on the CI list, and I see her ENT next > week to talk about getting the ball rolling on that. I have NO knowledge of > CI's. Can you recommend where I can learn about them? Do you have personal > stories or ideas you can share? My biggest question is, what are the chances > of it working? I hate to get my hopes up. I thought their would be a chance > of them turning it on, and it not working AT ALL. Her therapist from the > Deaf/Blind Project looked at me like I was from a different planet. She said > Meagan WILL hear her environment. I'm just so scared to believe that. I don > t want to be let down. Of all the things we have been through (TEF surgery, > heart surgery, brain surgery) this is the most devastating part of her > CHARGE for me. I want her to hear her family, more importantly, her twin > sister. : ( > > , mommy to Meagan (CHARGEr) and (17 months) and big brother > ( 3 1/2) > > > > > -- Re: Tips on Keeping In Hearing Aides > > Amy - Ethan received his hearing aid at 3 months old and his ear has no > lower lobe and is floppy so from the beginning, we used paper tape and taped > the hearing aid onto his ear (without covering up the microphone). He > couldn't and didn't pull it out and it didn't irritate his skin. Now, he > has a cochlear implant so we have other struggles in keeping him to wear > that! > > Jody - mom to Ethan (3.5 yrs - ChARGE) and (6.5 yrs) > > Amy McKinley wrote: > A few months ago, Max received his first set of hearing aides...and I was > sooo excited! I thought oh we'll just pop them in and no problem. Hmmm.. > not the case I learned quickly! > > I have the hardest time keeping them in....1) he is only 8 months old and > needs new molds every month due to growth 2) doesn't have great head control > yet and definitely doesn't sit so the aides get knocked out of place and/or > 3) he pulls them out (developmentally I love that he does that, but c'mon > Max, work with me here!!!) and sometimes treats them as binkies (if I leave > the room for a sec)!!! Nice $3K toys there buddy!!! > > ANY ADVICE??? > > So far we have tried two things. First the audiologist tried the plastic > huggies (I think that is what they were called) but they didn't seem to work > very well...they thought because of his size. Now we have little double > sided circles that we put behind his ear to help keep them in place. But > the tape doesn't deter Max...he pulls it with the aide! > > So now I am turning to you my favorite panel of experts...I'm sure many of > you have had this problem. Any advice for me? > > I want to have him wearing them more and more often, but I find myself not > putting them in because they are such a headache. I feel sooo incredibly > guilty about this...it's the one " area " I don't feel I am doing a good job, > which is very frustrating. (He is making great progress in some other areas > which is very encouraging - will post separately about that) > > We met with a speech therapist for the first time this past week and then > this week we have an eval with a speech pathologist. She is supposed to be > incredible, so I am hoping she may have some words of wisdom too. > > Thanks everyone!!! > > > Amy McKinley > Mom to MIGHTY MAX (CHARGE, 6 months old, 4 months corrected) > maxupdate.blogspot.com > > --------------------------------- > Yahoo! Mail > Bring photos to life! New PhotoMail makes sharing a breeze. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 , From my research among the CHARGE families, the results for cochlear implants have varied, but most of those I " spoke " to had a positive outcome. The process can be very long. Ethan has no auditory nerve in one ear and prior to implantation in his " good " ear, he had 50-75 db hearing with aides (really no access to speech). Now, almost a year after being implanted, he can hear 15-30 db. It wasn't as easy as it sounds to get to this point. The surgery was difficult because of the unusual anatomy of his ear and the aural rehab after turn on is necessary. I agree with Kim on being realistic on what the implant may bring. Prior to surgery, we would have been happy if he could just recognize sounds in his environment. It is wonderful that Ethan can hear music and now can understand some speech. If this is all that we get from it, it would be worth it because it has opening up his world. In addition to searching the CHARGE archieves, there is a support group of parents who are considering implants for their children. My son's audiologist recommended it to us, but I didn't ever subscribe. It is http://groups.yahoo.com/group/cicircle. Jody - mom to Ethan (3.5 yrs - ChARGE) and (6.5 yrs) Kim Lauger wrote: , Search the archives on this list under the heading of cochlear implant. You will find lots of input, some from families no longer active on the list. In addition, the handouts from the conferences that you can get from the CHARGE foundation have handouts pertaining to hearing, cochlear implants and so on in them. Just know that you want your team to have experience with CHARGE or to at least be talking with professionals who do have experience with CHARGE. The response in CHARGE is not nearly so black and white as in other kids. Some kids it may be this simple, others it takes a lot longer. The biggest message parents give is to be realistic about what your goal is - to come out of it with perfect hearing, doubtful - to increase the availability of sensory information, hopefully. Kim > Jody, my daughter wears hearing aides currently. They do not help with her > deafness to our knowledge. She is on the CI list, and I see her ENT next > week to talk about getting the ball rolling on that. I have NO knowledge of > CI's. Can you recommend where I can learn about them? Do you have personal > stories or ideas you can share? My biggest question is, what are the chances > of it working? I hate to get my hopes up. I thought their would be a chance > of them turning it on, and it not working AT ALL. Her therapist from the > Deaf/Blind Project looked at me like I was from a different planet. She said > Meagan WILL hear her environment. I'm just so scared to believe that. I don > t want to be let down. Of all the things we have been through (TEF surgery, > heart surgery, brain surgery) this is the most devastating part of her > CHARGE for me. I want her to hear her family, more importantly, her twin > sister. : ( > > , mommy to Meagan (CHARGEr) and (17 months) and big brother > ( 3 1/2) > > > > > -- Re: Tips on Keeping In Hearing Aides > > Amy - Ethan received his hearing aid at 3 months old and his ear has no > lower lobe and is floppy so from the beginning, we used paper tape and taped > the hearing aid onto his ear (without covering up the microphone). He > couldn't and didn't pull it out and it didn't irritate his skin. Now, he > has a cochlear implant so we have other struggles in keeping him to wear > that! > > Jody - mom to Ethan (3.5 yrs - ChARGE) and (6.5 yrs) > > Amy McKinley wrote: > A few months ago, Max received his first set of hearing aides...and I was > sooo excited! I thought oh we'll just pop them in and no problem. Hmmm.. > not the case I learned quickly! > > I have the hardest time keeping them in....1) he is only 8 months old and > needs new molds every month due to growth 2) doesn't have great head control > yet and definitely doesn't sit so the aides get knocked out of place and/or > 3) he pulls them out (developmentally I love that he does that, but c'mon > Max, work with me here!!!) and sometimes treats them as binkies (if I leave > the room for a sec)!!! Nice $3K toys there buddy!!! > > ANY ADVICE??? > > So far we have tried two things. First the audiologist tried the plastic > huggies (I think that is what they were called) but they didn't seem to work > very well...they thought because of his size. Now we have little double > sided circles that we put behind his ear to help keep them in place. But > the tape doesn't deter Max...he pulls it with the aide! > > So now I am turning to you my favorite panel of experts...I'm sure many of > you have had this problem. Any advice for me? > > I want to have him wearing them more and more often, but I find myself not > putting them in because they are such a headache. I feel sooo incredibly > guilty about this...it's the one " area " I don't feel I am doing a good job, > which is very frustrating. (He is making great progress in some other areas > which is very encouraging - will post separately about that) > > We met with a speech therapist for the first time this past week and then > this week we have an eval with a speech pathologist. She is supposed to be > incredible, so I am hoping she may have some words of wisdom too. > > Thanks everyone!!! > > > Amy McKinley > Mom to MIGHTY MAX (CHARGE, 6 months old, 4 months corrected) > maxupdate.blogspot.com > > --------------------------------- > Yahoo! Mail > Bring photos to life! New PhotoMail makes sharing a breeze. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 , From my research among the CHARGE families, the results for cochlear implants have varied, but most of those I " spoke " to had a positive outcome. The process can be very long. Ethan has no auditory nerve in one ear and prior to implantation in his " good " ear, he had 50-75 db hearing with aides (really no access to speech). Now, almost a year after being implanted, he can hear 15-30 db. It wasn't as easy as it sounds to get to this point. The surgery was difficult because of the unusual anatomy of his ear and the aural rehab after turn on is necessary. I agree with Kim on being realistic on what the implant may bring. Prior to surgery, we would have been happy if he could just recognize sounds in his environment. It is wonderful that Ethan can hear music and now can understand some speech. If this is all that we get from it, it would be worth it because it has opening up his world. In addition to searching the CHARGE archieves, there is a support group of parents who are considering implants for their children. My son's audiologist recommended it to us, but I didn't ever subscribe. It is http://groups.yahoo.com/group/cicircle. Jody - mom to Ethan (3.5 yrs - ChARGE) and (6.5 yrs) Kim Lauger wrote: , Search the archives on this list under the heading of cochlear implant. You will find lots of input, some from families no longer active on the list. In addition, the handouts from the conferences that you can get from the CHARGE foundation have handouts pertaining to hearing, cochlear implants and so on in them. Just know that you want your team to have experience with CHARGE or to at least be talking with professionals who do have experience with CHARGE. The response in CHARGE is not nearly so black and white as in other kids. Some kids it may be this simple, others it takes a lot longer. The biggest message parents give is to be realistic about what your goal is - to come out of it with perfect hearing, doubtful - to increase the availability of sensory information, hopefully. Kim > Jody, my daughter wears hearing aides currently. They do not help with her > deafness to our knowledge. She is on the CI list, and I see her ENT next > week to talk about getting the ball rolling on that. I have NO knowledge of > CI's. Can you recommend where I can learn about them? Do you have personal > stories or ideas you can share? My biggest question is, what are the chances > of it working? I hate to get my hopes up. I thought their would be a chance > of them turning it on, and it not working AT ALL. Her therapist from the > Deaf/Blind Project looked at me like I was from a different planet. She said > Meagan WILL hear her environment. I'm just so scared to believe that. I don > t want to be let down. Of all the things we have been through (TEF surgery, > heart surgery, brain surgery) this is the most devastating part of her > CHARGE for me. I want her to hear her family, more importantly, her twin > sister. : ( > > , mommy to Meagan (CHARGEr) and (17 months) and big brother > ( 3 1/2) > > > > > -- Re: Tips on Keeping In Hearing Aides > > Amy - Ethan received his hearing aid at 3 months old and his ear has no > lower lobe and is floppy so from the beginning, we used paper tape and taped > the hearing aid onto his ear (without covering up the microphone). He > couldn't and didn't pull it out and it didn't irritate his skin. Now, he > has a cochlear implant so we have other struggles in keeping him to wear > that! > > Jody - mom to Ethan (3.5 yrs - ChARGE) and (6.5 yrs) > > Amy McKinley wrote: > A few months ago, Max received his first set of hearing aides...and I was > sooo excited! I thought oh we'll just pop them in and no problem. Hmmm.. > not the case I learned quickly! > > I have the hardest time keeping them in....1) he is only 8 months old and > needs new molds every month due to growth 2) doesn't have great head control > yet and definitely doesn't sit so the aides get knocked out of place and/or > 3) he pulls them out (developmentally I love that he does that, but c'mon > Max, work with me here!!!) and sometimes treats them as binkies (if I leave > the room for a sec)!!! Nice $3K toys there buddy!!! > > ANY ADVICE??? > > So far we have tried two things. First the audiologist tried the plastic > huggies (I think that is what they were called) but they didn't seem to work > very well...they thought because of his size. Now we have little double > sided circles that we put behind his ear to help keep them in place. But > the tape doesn't deter Max...he pulls it with the aide! > > So now I am turning to you my favorite panel of experts...I'm sure many of > you have had this problem. Any advice for me? > > I want to have him wearing them more and more often, but I find myself not > putting them in because they are such a headache. I feel sooo incredibly > guilty about this...it's the one " area " I don't feel I am doing a good job, > which is very frustrating. (He is making great progress in some other areas > which is very encouraging - will post separately about that) > > We met with a speech therapist for the first time this past week and then > this week we have an eval with a speech pathologist. She is supposed to be > incredible, so I am hoping she may have some words of wisdom too. > > Thanks everyone!!! > > > Amy McKinley > Mom to MIGHTY MAX (CHARGE, 6 months old, 4 months corrected) > maxupdate.blogspot.com > > --------------------------------- > Yahoo! Mail > Bring photos to life! New PhotoMail makes sharing a breeze. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 I'm with you, if Meggy can even just hear her environment, I would be in Heaven! With Ethan hearing at 15-30 dbls, is he able to attempt speech? Even this type of stuff, I don't understand. Does he hear better and better over time? Or, once it is on, is that the level in which he can hear? Gosh, I'm embarrassed to even be asking these questions...I just don't get it! Was the surgery a doozy? What was his recovery? How long until they turned it on? How did he react to his first sounds? Anybody with this experience, feel free to jump in! I feel like a kid in a candy shop getting this info! Thanks to all!! , mommy to Meagan (CHaRgE) and 17 months, and big brother 3 1/2 years, married to the best daddy in the world for 9 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 I'm with you, if Meggy can even just hear her environment, I would be in Heaven! With Ethan hearing at 15-30 dbls, is he able to attempt speech? Even this type of stuff, I don't understand. Does he hear better and better over time? Or, once it is on, is that the level in which he can hear? Gosh, I'm embarrassed to even be asking these questions...I just don't get it! Was the surgery a doozy? What was his recovery? How long until they turned it on? How did he react to his first sounds? Anybody with this experience, feel free to jump in! I feel like a kid in a candy shop getting this info! Thanks to all!! , mommy to Meagan (CHaRgE) and 17 months, and big brother 3 1/2 years, married to the best daddy in the world for 9 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 Yes, I think speech can be heard at around 25-35 db so Ethan can hear speech and he does respond to speech. But it is a long road to get there. They turned Ethan on at about one month after surgery and they are very slow in that process so not to scare. Ethan's first reaction when they turned him on was crying, which I told was typical. Then we slowly had to increase the volume and every couple of months, a new hearing test was necessary to see where they currently are hearing and how much reprogramming to the implant needs to be done. Even though Ethan can hear speech, he cannot speak himself because he has a trach and does not tolerate the speaking valve that you use with trachs. So for now, he gestures, signs and uses pictures. Hopefully, he will be able to speak someday, but we are just happy that he can hear us. On the surgery side, they need a CT of the temporal lobes and an MRI before surgery to determine if they are a candidate. Ethan's surgeon had done over 400+ surgeries at Children's Hospital in Chicago and told us that Ethan's was the most difficult surgery she had done. Basically, his facial nerve was not in the right spot even though the CT/MRI didn't indicate that. And about 4 hours after being in surgery, she came out to ask us if she wanted us to go on because she was afraid she was damaging his facial nerve since she couldn't follow it (there is a piece of equipment in surgery that helps with this). But fortunately, the side that we were implanting already had facial parlysis so we thought that it couldn't get much worse. And his parlysis didn't get any worse after the surgery. There are a lot of risks with this surgery, but for us, the facial nerve caused most of the problems. His recovery was remarkable. He was in surgery for 7 hours (about 4 hours is typical) and he came home that same night. We do have night nursing so I think we were able to come home mainly because of that reason. The recovery was quick and within a few days, he was back to himself. Well I hope that gave you a little idea of our experience. Feel free to ask any more questions. Jody and Melton wrote: I'm with you, if Meggy can even just hear her environment, I would be in Heaven! With Ethan hearing at 15-30 dbls, is he able to attempt speech? Even this type of stuff, I don't understand. Does he hear better and better over time? Or, once it is on, is that the level in which he can hear? Gosh, I'm embarrassed to even be asking these questions...I just don't get it! Was the surgery a doozy? What was his recovery? How long until they turned it on? How did he react to his first sounds? Anybody with this experience, feel free to jump in! I feel like a kid in a candy shop getting this info! Thanks to all!! , mommy to Meagan (CHaRgE) and 17 months, and big brother 3 1/2 years, married to the best daddy in the world for 9 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 Gosh, reading this, I am very excited yet so scared. Meggy doesn't have any facial paralysis permanently. But, she has this weird thing that it comes and goes (not too often) when in an upright position. There are lots of physical theories for this, which freaks me out to put this surgery on top of it all. I don't know what I would do if I had to choose between her hearing and paralyzing her facial nerve. Boy, this could send me into a frenzy! So, for today, I won't think of it. One day at a time. What was your reaction when you found out he could hear? -- Re: CI advice to brandi Yes, I think speech can be heard at around 25-35 db so Ethan can hear speech and he does respond to speech. But it is a long road to get there. They turned Ethan on at about one month after surgery and they are very slow in that process so not to scare. Ethan's first reaction when they turned him on was crying, which I told was typical. Then we slowly had to increase the volume and every couple of months, a new hearing test was necessary to see where they currently are hearing and how much reprogramming to the implant needs to be done. Even though Ethan can hear speech, he cannot speak himself because he has a trach and does not tolerate the speaking valve that you use with trachs. So for now, he gestures, signs and uses pictures. Hopefully, he will be able to speak someday, but we are just happy that he can hear us. On the surgery side, they need a CT of the temporal lobes and an MRI before surgery to determine if they are a candidate. Ethan's surgeon had done over 400+ surgeries at Children's Hospital in Chicago and told us that Ethan's was the most difficult surgery she had done. Basically, his facial nerve was not in the right spot even though the CT/MRI didn't indicate that. And about 4 hours after being in surgery, she came out to ask us if she wanted us to go on because she was afraid she was damaging his facial nerve since she couldn't follow it (there is a piece of equipment in surgery that helps with this). But fortunately, the side that we were implanting already had facial parlysis so we thought that it couldn't get much worse. And his parlysis didn't get any worse after the surgery. There are a lot of risks with this surgery, but for us, the facial nerve caused most of the problems. His recovery was remarkable. He was in surgery for 7 hours (about 4 hours is typical) and he came home that same night. We do have night nursing so I think we were able to come home mainly because of that reason. The recovery was quick and within a few days, he was back to himself. Well I hope that gave you a little idea of our experience. Feel free to ask any more questions. Jody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2006 Report Share Posted March 14, 2006 Gosh, reading this, I am very excited yet so scared. Meggy doesn't have any facial paralysis permanently. But, she has this weird thing that it comes and goes (not too often) when in an upright position. There are lots of physical theories for this, which freaks me out to put this surgery on top of it all. I don't know what I would do if I had to choose between her hearing and paralyzing her facial nerve. Boy, this could send me into a frenzy! So, for today, I won't think of it. One day at a time. What was your reaction when you found out he could hear? -- Re: CI advice to brandi Yes, I think speech can be heard at around 25-35 db so Ethan can hear speech and he does respond to speech. But it is a long road to get there. They turned Ethan on at about one month after surgery and they are very slow in that process so not to scare. Ethan's first reaction when they turned him on was crying, which I told was typical. Then we slowly had to increase the volume and every couple of months, a new hearing test was necessary to see where they currently are hearing and how much reprogramming to the implant needs to be done. Even though Ethan can hear speech, he cannot speak himself because he has a trach and does not tolerate the speaking valve that you use with trachs. So for now, he gestures, signs and uses pictures. Hopefully, he will be able to speak someday, but we are just happy that he can hear us. On the surgery side, they need a CT of the temporal lobes and an MRI before surgery to determine if they are a candidate. Ethan's surgeon had done over 400+ surgeries at Children's Hospital in Chicago and told us that Ethan's was the most difficult surgery she had done. Basically, his facial nerve was not in the right spot even though the CT/MRI didn't indicate that. And about 4 hours after being in surgery, she came out to ask us if she wanted us to go on because she was afraid she was damaging his facial nerve since she couldn't follow it (there is a piece of equipment in surgery that helps with this). But fortunately, the side that we were implanting already had facial parlysis so we thought that it couldn't get much worse. And his parlysis didn't get any worse after the surgery. There are a lot of risks with this surgery, but for us, the facial nerve caused most of the problems. His recovery was remarkable. He was in surgery for 7 hours (about 4 hours is typical) and he came home that same night. We do have night nursing so I think we were able to come home mainly because of that reason. The recovery was quick and within a few days, he was back to himself. Well I hope that gave you a little idea of our experience. Feel free to ask any more questions. Jody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 - Your right in not worrying about the surgery. There is a long process to get to that point. I went into the surgery knowing the risks and feeling fairly comfortable, but like to share our story because it may not be something that doctors like to talk about. Unlike Ethan's cochlear implant surgeon, he will be having surgery in 2 weeks to decend his testes and the urologist was very upfront with us that he suspects that this surgery will be difficult. So I am going into this one more prepared for problems. I do think Ethan's auditory nerve was smaller than normal and do recall hearing that from other parents about their CHARGErs. It didn't have an impact on Ethan being able to get the implant, but I don't know much on that topic. I am more and more amazed over time at the fact that he can hear now. I realized all of the things that he was missing out on in the first 3 years of his life. And I am thankful that he can enjoy things like music and it has meaning. But, it has been a lot of work to get to this point and he still takes his implant off a lot (sensory, we think). He has to learn to listen because he hasn't for so long. Ethan's aural rehab therapist has another CHARGEr who was implanted at an older age (around 9 yrs) and he hasn't had the success that Ethan has. And I realize that this may be as far as Ethan gets with the hearing. You need to go into the process with realistic expectations that every child is different and every outcome is different. Jody and Melton wrote: Gosh, reading this, I am very excited yet so scared. Meggy doesn't have any facial paralysis permanently. But, she has this weird thing that it comes and goes (not too often) when in an upright position. There are lots of physical theories for this, which freaks me out to put this surgery on top of it all. I don't know what I would do if I had to choose between her hearing and paralyzing her facial nerve. Boy, this could send me into a frenzy! So, for today, I won't think of it. One day at a time. What was your reaction when you found out he could hear? -- Re: CI advice to brandi Yes, I think speech can be heard at around 25-35 db so Ethan can hear speech and he does respond to speech. But it is a long road to get there. They turned Ethan on at about one month after surgery and they are very slow in that process so not to scare. Ethan's first reaction when they turned him on was crying, which I told was typical. Then we slowly had to increase the volume and every couple of months, a new hearing test was necessary to see where they currently are hearing and how much reprogramming to the implant needs to be done. Even though Ethan can hear speech, he cannot speak himself because he has a trach and does not tolerate the speaking valve that you use with trachs. So for now, he gestures, signs and uses pictures. Hopefully, he will be able to speak someday, but we are just happy that he can hear us. On the surgery side, they need a CT of the temporal lobes and an MRI before surgery to determine if they are a candidate. Ethan's surgeon had done over 400+ surgeries at Children's Hospital in Chicago and told us that Ethan's was the most difficult surgery she had done. Basically, his facial nerve was not in the right spot even though the CT/MRI didn't indicate that. And about 4 hours after being in surgery, she came out to ask us if she wanted us to go on because she was afraid she was damaging his facial nerve since she couldn't follow it (there is a piece of equipment in surgery that helps with this). But fortunately, the side that we were implanting already had facial parlysis so we thought that it couldn't get much worse. And his parlysis didn't get any worse after the surgery. There are a lot of risks with this surgery, but for us, the facial nerve caused most of the problems. His recovery was remarkable. He was in surgery for 7 hours (about 4 hours is typical) and he came home that same night. We do have night nursing so I think we were able to come home mainly because of that reason. The recovery was quick and within a few days, he was back to himself. Well I hope that gave you a little idea of our experience. Feel free to ask any more questions. Jody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 - Your right in not worrying about the surgery. There is a long process to get to that point. I went into the surgery knowing the risks and feeling fairly comfortable, but like to share our story because it may not be something that doctors like to talk about. Unlike Ethan's cochlear implant surgeon, he will be having surgery in 2 weeks to decend his testes and the urologist was very upfront with us that he suspects that this surgery will be difficult. So I am going into this one more prepared for problems. I do think Ethan's auditory nerve was smaller than normal and do recall hearing that from other parents about their CHARGErs. It didn't have an impact on Ethan being able to get the implant, but I don't know much on that topic. I am more and more amazed over time at the fact that he can hear now. I realized all of the things that he was missing out on in the first 3 years of his life. And I am thankful that he can enjoy things like music and it has meaning. But, it has been a lot of work to get to this point and he still takes his implant off a lot (sensory, we think). He has to learn to listen because he hasn't for so long. Ethan's aural rehab therapist has another CHARGEr who was implanted at an older age (around 9 yrs) and he hasn't had the success that Ethan has. And I realize that this may be as far as Ethan gets with the hearing. You need to go into the process with realistic expectations that every child is different and every outcome is different. Jody and Melton wrote: Gosh, reading this, I am very excited yet so scared. Meggy doesn't have any facial paralysis permanently. But, she has this weird thing that it comes and goes (not too often) when in an upright position. There are lots of physical theories for this, which freaks me out to put this surgery on top of it all. I don't know what I would do if I had to choose between her hearing and paralyzing her facial nerve. Boy, this could send me into a frenzy! So, for today, I won't think of it. One day at a time. What was your reaction when you found out he could hear? -- Re: CI advice to brandi Yes, I think speech can be heard at around 25-35 db so Ethan can hear speech and he does respond to speech. But it is a long road to get there. They turned Ethan on at about one month after surgery and they are very slow in that process so not to scare. Ethan's first reaction when they turned him on was crying, which I told was typical. Then we slowly had to increase the volume and every couple of months, a new hearing test was necessary to see where they currently are hearing and how much reprogramming to the implant needs to be done. Even though Ethan can hear speech, he cannot speak himself because he has a trach and does not tolerate the speaking valve that you use with trachs. So for now, he gestures, signs and uses pictures. Hopefully, he will be able to speak someday, but we are just happy that he can hear us. On the surgery side, they need a CT of the temporal lobes and an MRI before surgery to determine if they are a candidate. Ethan's surgeon had done over 400+ surgeries at Children's Hospital in Chicago and told us that Ethan's was the most difficult surgery she had done. Basically, his facial nerve was not in the right spot even though the CT/MRI didn't indicate that. And about 4 hours after being in surgery, she came out to ask us if she wanted us to go on because she was afraid she was damaging his facial nerve since she couldn't follow it (there is a piece of equipment in surgery that helps with this). But fortunately, the side that we were implanting already had facial parlysis so we thought that it couldn't get much worse. And his parlysis didn't get any worse after the surgery. There are a lot of risks with this surgery, but for us, the facial nerve caused most of the problems. His recovery was remarkable. He was in surgery for 7 hours (about 4 hours is typical) and he came home that same night. We do have night nursing so I think we were able to come home mainly because of that reason. The recovery was quick and within a few days, he was back to himself. Well I hope that gave you a little idea of our experience. Feel free to ask any more questions. Jody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 - Your right in not worrying about the surgery. There is a long process to get to that point. I went into the surgery knowing the risks and feeling fairly comfortable, but like to share our story because it may not be something that doctors like to talk about. Unlike Ethan's cochlear implant surgeon, he will be having surgery in 2 weeks to decend his testes and the urologist was very upfront with us that he suspects that this surgery will be difficult. So I am going into this one more prepared for problems. I do think Ethan's auditory nerve was smaller than normal and do recall hearing that from other parents about their CHARGErs. It didn't have an impact on Ethan being able to get the implant, but I don't know much on that topic. I am more and more amazed over time at the fact that he can hear now. I realized all of the things that he was missing out on in the first 3 years of his life. And I am thankful that he can enjoy things like music and it has meaning. But, it has been a lot of work to get to this point and he still takes his implant off a lot (sensory, we think). He has to learn to listen because he hasn't for so long. Ethan's aural rehab therapist has another CHARGEr who was implanted at an older age (around 9 yrs) and he hasn't had the success that Ethan has. And I realize that this may be as far as Ethan gets with the hearing. You need to go into the process with realistic expectations that every child is different and every outcome is different. Jody and Melton wrote: Gosh, reading this, I am very excited yet so scared. Meggy doesn't have any facial paralysis permanently. But, she has this weird thing that it comes and goes (not too often) when in an upright position. There are lots of physical theories for this, which freaks me out to put this surgery on top of it all. I don't know what I would do if I had to choose between her hearing and paralyzing her facial nerve. Boy, this could send me into a frenzy! So, for today, I won't think of it. One day at a time. What was your reaction when you found out he could hear? -- Re: CI advice to brandi Yes, I think speech can be heard at around 25-35 db so Ethan can hear speech and he does respond to speech. But it is a long road to get there. They turned Ethan on at about one month after surgery and they are very slow in that process so not to scare. Ethan's first reaction when they turned him on was crying, which I told was typical. Then we slowly had to increase the volume and every couple of months, a new hearing test was necessary to see where they currently are hearing and how much reprogramming to the implant needs to be done. Even though Ethan can hear speech, he cannot speak himself because he has a trach and does not tolerate the speaking valve that you use with trachs. So for now, he gestures, signs and uses pictures. Hopefully, he will be able to speak someday, but we are just happy that he can hear us. On the surgery side, they need a CT of the temporal lobes and an MRI before surgery to determine if they are a candidate. Ethan's surgeon had done over 400+ surgeries at Children's Hospital in Chicago and told us that Ethan's was the most difficult surgery she had done. Basically, his facial nerve was not in the right spot even though the CT/MRI didn't indicate that. And about 4 hours after being in surgery, she came out to ask us if she wanted us to go on because she was afraid she was damaging his facial nerve since she couldn't follow it (there is a piece of equipment in surgery that helps with this). But fortunately, the side that we were implanting already had facial parlysis so we thought that it couldn't get much worse. And his parlysis didn't get any worse after the surgery. There are a lot of risks with this surgery, but for us, the facial nerve caused most of the problems. His recovery was remarkable. He was in surgery for 7 hours (about 4 hours is typical) and he came home that same night. We do have night nursing so I think we were able to come home mainly because of that reason. The recovery was quick and within a few days, he was back to himself. Well I hope that gave you a little idea of our experience. Feel free to ask any more questions. Jody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2006 Report Share Posted March 15, 2006 Jody and , I am loving this discussion, please don't stop. , no question is too foolish and I am learning from Jody's replies to your questions. As many here know, our (age 5 and a big chunk) is due for an implant in just over 2 weeks. I feel the wave of nerves rising but it has taken us a long time to get here so it will happen unless something awful happens to stop it now. She is due for an EEG the day before so who knows? also has no auditory nerve on one side and her existing nerve is smaller than normal. This was one of the things we really had to think about as it is still uncertain as to whether she has an functioning nerve (is it called an auditory nerve neuropathy?). There is the question mark about whether this is more likely to compromise how effective the implant is so without going down the path of " PHEW, IT WORKED FOR ETHAN SO WE NEED NOT WORRY " I am reassured by Jody's comment that Ethan also has a small nerve and how well he has done. For us too, if only has access to environmental sounds, that will be great. Of course if she has access to speech it will be fantastic, but if not, the environmental will be a great success. What we have said to the therapist assessors all along is that it would be great if she can hear the car before it hits her, especially as her vision is very much compromised and this is all she has to rely on at present. Our decision to have her implanted is solely because she is deafblind. We both just know we probably might not have bothered otherwise but she is heavy on sensory issues so any additional sensory input would be very welcome. I agree that realistic expectations are all-important with our kids since the post-implant responses are so varied. We found that 's assessors were really hooked on speech being the " good outcome " and we had to remind them that good outcome for us was NOT necessarily that and that in CHARGE terms, we had to use different measuring tools. Even as we go into surgery, we are still having to remind people (my mother being the chief culprit) that is not about to be cured of deafness. 's surgeon has not implanted a child with CHARGE before but has implanted lots of children with abnormal cochleas (cochleai??? Rats, I gave up Latin at a very early stage!). We met with him last week and emphasised that he will be in theatre with for more than the normal 2 hours he quoted us. He thinks he can tell from the scans that her facial nerve follows a typical path but I have my doubts. Perhaps this is all part of what I have learned as now I expect the worst, hope for the best and whatever comes can only be a pleasant surprise. We will see. Jody, will be back to you and and Jeanie about the post-implant stuff, and , will be more than happy to share the experience as we go through it so feel free to ask anything you wish. Flo (having had contact with chicken pox this week hoping this does not compromise 's surgery!) PS Jody, good luck with Ethan's surgery. > > - Your right in not worrying about the surgery. There is a long > process to get to that point. I went into the surgery knowing the risks and > feeling fairly comfortable, but like to share our story because it may not > be something that doctors like to talk about. . > > I do think Ethan's auditory nerve was smaller than normal and do recall > hearing that from other parents about their CHARGErs. It didn't have an > impact on Ethan being able to get the implant, but I don't know much on that > topic. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 , Wow, what a wonderful story. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
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